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To be sick of hidden disabilities getting overlooked

(125 Posts)
ProudAS Wed 02-Jan-13 16:59:42

We've got a massive great thread on this board about accommodating wheelchair users on buses but I don't recall seeing anything on such a scale about hidden disabilities such as autism.

Tourist attractions, hotels etc nearly always publicise how they can accommodate visitors who use a wheelchair or guide dog but nothing for those who may have difficulty with crowds, need routine etc.

A friend of mine who has Aspergers got ridiculed by his employer for it and bullied out of his job. I doubt that colleagues would have stood by and let someone with a physical disability be treated in this way. His condition also meant that he couldn't face going to a tribunal.

Another ASD friend got forced out of a job because he was having difficulty dealing with people. The employer's attitude being that he could be "normal" if he tried hard enough.

A local man with autism got forced off a bus after failing to understand a figure of speech from the driver who then jeered at him along with other passengers and told to pull himself together.

Despite having Aspergers myself I got accused of being anti-disabled after saying that a wheelchair user had made a nuisance of himself. The statement had nothing to do with his disability and everything to do with his insulting and bad mouthing my colleagues.

Parents whose children have autism/ADHD being called bad parents because of the way the child is or abruptly told to give them a good clout to cure them. Explanations about the child's disability get met with "He doesn't look disabled!". I don't remember the last time some one was called a bad parent because their child was visually impaired or told to cure their spina-bifida with a good clout.

Worker at theme park saying that he could only allow a disabled person and one other individual on to ride through the exit to a group of 4 (one of whom with ASD/anxiety and another in wheelchair) and expected person with anxiety to get in crowded queue whilst allowing wheelchair user on.

DH's aunt (who knows I have ASD) saying it was extra good to see BIL at family party when he had recently had surgery. Seeing me was only good despite awkwardness with social situations.

Crawling Wed 02-Jan-13 18:14:08

defy agree I have a severely autistic child and I'm sick of people giving me funny looks or saying stupid things one comment was someone I knew from school who said to dd in a haughty voice "why are you making them stupid noises you are not a baby" I was so upset I was crying for ages. Its bad enough when I attend a small group setting and have to leave as dd is to distressed without helpful comments said in a superior voice about giving smacks, taking her out more or being stricter.

sannaville Wed 02-Jan-13 18:16:26

Sirzy its probably likely to change week on week depending on how much sleep she's had and a whole load of other things. Will keep looking for a pay on the door one

MsNobodyAgain Wed 02-Jan-13 18:16:32

It's not a hidden disability. It's just less obvious.

sannaville Wed 02-Jan-13 18:18:20

My two dds appear very NT but can exhibit very challenging behaviour so I get the typical 'bad parent'looks!

SilverAndSparklyKat Wed 02-Jan-13 18:22:24

Some people are really understanding of my never ending hospital appointments, other people seem to think I enjoy spending half my waking hours at outpatients. It's not time off for a party people, if I don't go I'll die. Capisce?

BunFagFreddie Wed 02-Jan-13 18:22:59

Mental illness is another hidden disability. There's also the stigma of having a mental illness. With many serious mental health conditions they are variable. You might only see that person on a good day, so it's easy to think that they are just being silly and that they could pull themselves together if the really wanted to.

PeggyCarter Wed 02-Jan-13 18:27:08

Message withdrawn at poster's request.

Crawling Wed 02-Jan-13 18:28:09

well said bunfagfreddie 80% percent of the time I'm the most together person you meet 20% of the time I'm psychotic and with suicidal or manic mood disorder. people who don't know me well would never guess I live with a major mental illness.

TheNebulousBoojum Wed 02-Jan-13 18:28:20

'It's not a hidden disability. It's just less obvious.'

confused Care to elaborate, MsNobodyAgain?
My DS has a veneer of NT skills and learnt behaviours that conceal his AS to most observers. I'd call that a hidden disability

Ineedmorepatience Wed 02-Jan-13 18:35:14

I agree nebulous, my Dd3's ASD is definitely invisible most of the time because she struggles and works really hard to keep it that way.

Sometimes though something will happen that she cant cope with and then it all come flooding out.

I too get a bit fed up with the judgy people assuming that I have poor parenting skills when in fact they know nothing about me or Dd3

TheNebulousBoojum Wed 02-Jan-13 18:35:57

'Tourist attractions, hotels etc nearly always publicise how they can accommodate visitors who use a wheelchair or guide dog but nothing for those who may have difficulty with crowds, need routine etc.

How could a tourist attraction better accommodate those people?'

Some places do very well, TJPJ. I've been looking out for AS-friendly places for around 15 years, and certainly in many places they have upped their game over the years. Depends on the place and the child. I know from second-hand reports that many theme parks have a lot of support in place, but my DS hates them so we don't go.
Museums, galleries, historic buildings, all sorts of places when I've said to a member of staff 'he has Asperger's' to explain odd behaviour, they have shown increasing levels of tolerance and reasonable accommodation over the years.
Largely I feel becaiuse parents of SN children have become bolshier more confident and less apologetic and so the awareness of children being on the spectrum has increased.
So if the attractions keep listening, the opportunities will continue to grow.

MsNobodyAgain Wed 02-Jan-13 18:37:13

And using a wheelchair is a problem in terms of space and fire safety issues. That is why they are more 'accommodated' if that is the right term to use than people with ASD or anxiety issues.

I am a mother of 2 DSs with special needs. They have learning difficulties. They are both partially sighted. One has ASD. One has suspected Aspergers. One had leukaemia and was in a wheelchair for quite a while. I'm only saying this to explain I've seen both sides of the coin.

MsNobodyAgain Wed 02-Jan-13 18:40:15

TheNebulous see above.

Amytheflag Wed 02-Jan-13 18:40:33

I don't know with this. I think its a little unreasonable to expect people in everyday life to understand a disability if they can't see it and make an immediate opinion of it (like a wheelchair) and know nothing about it previously. I say this as someone with mental health problems who has to explain to every bloody person why I can't do such and such because they dont accept the short version and had a health visitor try and "fix" me by patronising me completely. As annoying and frustrating as this is all the time, I still get that the only knowledge the average person has of my disorder tends to be TV that makes a joke of it so I can't get too angry when they don't respect my issues without the in depth explanation.

At the same time though, I can understand completely your point of view. I just think its unreasonable to expect everyone these days to understand and adapt to every disability when they are seeing it for the first time.

PeggyCarter Wed 02-Jan-13 18:41:27

Message withdrawn at poster's request.

OxyMoron Wed 02-Jan-13 18:45:11

Yup, DD has a physical but hidden disability, no learning disabilities, and I feel that leaves her kind of nowhere. She looks like a healthy child, but the care she needs can be overwhelming. She is on highest rate DLA, has been since she was 1 and it has been reawarded until she's 14.
Yet asking for the help she needs in school has been a nightmare with implications from several people that we are unreasonable in asking for these things that are't needed by others (I.e. a 'why can't you just get on with it' attitude.)

There's so much ignorance around, which is understandable. If you've never had to deal with dd's condition I don't expect you to know what's involved. But maybe have the grace to recognise your lack of understanding and to listen to me when I explain the facts. And of course ,not to assume that you know more about it than I do ,when I live this every day.

Fluffy1234 Wed 02-Jan-13 18:47:27

Ds3 has epilepsy. Life is hard.

TheNebulousBoojum Wed 02-Jan-13 18:48:24

Clearly labelled routes round things, breathing spaces where you can step out of the herd and get your shit together, tolerance for wearing earphones and having iPods on. Or understanding about explaining what is going to happen and why before you do it. Which the security guard at one establishment now will remember after trying to take DS's bag and search it without explanation. Fortunately the other guard understood what was happening in DS's head and intervened in time.
Being allowed to deal with odd behaviour without anyone making a huge fuss, just quietly asking him (or me)if there's anything they can do and then stepping back if the answer is no.
Just a few of the things that make life easier.

MrsHoarder Wed 02-Jan-13 18:49:51

For those complaining about bring talked to slowly due to a hearing impairment, is that boot the correct thing to do? If someone says to me sorry I didn't catch that I'd repeat it more slowly thinking that my fast gable was causing a problem.

PeggyCarter Wed 02-Jan-13 18:52:09

Message withdrawn at poster's request.

TheNebulousBoojum Wed 02-Jan-13 18:54:22

It's called Reasonable Accommodation, Puddlejumper. Costs little but has a huge impact on the lives of those directly involved.

MsNobodyAgain Wed 02-Jan-13 18:56:34

I find most people are good and understanding if I just say my twins don't see very well and have autism. They have nearly always let us back in any queue and put up with tantrums.

amicissimma Wed 02-Jan-13 18:58:08

I understand why you say this, but I think that it's an endless problem.

Often, needs clash. For example, ref the endless 'disabled toilets should be reserved for wheelchair users' argument: there are several medical conditions where the sufferer needs to use the toilet pronto, while the wheelchair user may have no bowel or bladder problems at all. If there is a queue, the first person's need for priority isn't obvious.

Or, replacing steps with a ramp can allow access to a wheelchair user but bar access to people with certain types of partial sightedness.

Or, the loud shriek that a child might omit might cause a sufferer from trigeminal neuralgia weeks of pain.

Or, someone on crutches may think that the person not giving up a seat in a crowded bus or train is mean, but that person may have severe back pain.

Or, someone with mental health issues may find another's mental health problems beyond their ability to handle.

All examples I have actually encountered. The only solution that I can see is consideration and tolerence all round, but even that can be a challenge after a day, night, week, month, etc of severe stress.

BunFagFreddie Wed 02-Jan-13 18:58:09

Crawling, do you ever tell people about your illness? For example, you might feel too depressed to cope with doing something. Would you explain that to someone? I have done in the past, but there's always some insensitive, smart arsed git who says "What have you got to be depressed about?" or they tell you to pull yourself together, or worse just laugh.

I'd love to be more open, because there really shouldn't be a stigma surrounding mental illnesses, but there still is. Nobody bats an eyelid about same sex marriages, but it's not ok to have bipolar or schizophrenia?

Not that there's anything wrong with same sex marriages, but you'd expect attitudes towards mental illness to have moved on, just like attitudes towards homosexuality and other issues.

PeggyCarter Wed 02-Jan-13 18:58:36

Message withdrawn at poster's request.

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